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Why is it that the patient is left with the burden of researching a treatment and navigating a regulatory access and insurance nightmare while they are sick?

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The beauty of Federal Right to Try vs. State Right to Try or FDA compassionate use is that there is no regulatory burden. If the patient wants to try a treatment, a doctor will sign off on it and the company agrees to provide the drug that's all that's needed.

Most companies that provide drugs under Right to Try or compassionate use do so at no cost although a few will charge a very minimal cost.